Perthes' Disease in Children

One of my children suffered from Perthes Disease many years ago, and because of that experience I want to write and reassure any mother out there whose child is newly diagnosed that there is light at the end of the tunnel, and that your child will more than likely make a full recovery.

It is a long road, but a hopeful one, and while things are hard on your child now, being unable to run or jump or do what other children do, things will get better.

It is horrible for them at the time, not not being able to have a bath or wear attractive clothes, perhaps even having to switch schools because normal schools don't have disabled facilities. This is a major life-changing experience for them..

You will be so proud of the way your child accepts everything, and get on with their new life.

They have to get used to being in a wheelchair, to making new friends at school if they have to switch schools, and they have to get used to sitting on the sidelines when they play with their friends after school.

Perthes Disease occurs when the ball at the neck of the femur dissolves or breaks down. The ball normally sits inside the ball joint of the pelvis. When it breaks down, it moves out of position and so the child develops a limp,

All children with Perthes start off with a limp, and complain of vague aches and pains in the affected leg. This pain can be quite severe at times.

Signs and symptoms of Perthes.

• leg pain
• pain goes away at rest
• returns with activity
• no signs of bruising
• the child has not previously had a fall or injury.
• pain moves around, can be on thigh or calve.
• does not clear up after a couple of weeks

If your child develops the above symptoms, take him or her to your doctor and ask them to rule this condition out.

While it is rare, the recovery rates and prognosis are much improved by early diagnosis and treatment.

A good consultant will explain in detail to you the worst possible outcome, which is that it does not fully heal, that your child will always have some level of disability and may indeed need a hip transplant before they are 30.

Please bear in mind that this is the worst possible scenario, and that with modern treatment and early diagnosis, the chance are your child will make a full recovery.

If your child is diagnosed with Perthes, your hospital consultant will explain to you exactly what your child is capable of doing.

With my child, they treated her initially with nothing more than advice not to run or jump, to weight-bear on the affected hip as little as possible, and then just wait and see how Mother Nature ran it's course.

Some children heal up on their own and never need any other treatment, but it takes a long time, 2 to 3 years.

The road to recovery is a long one.

After keeping an eye on your child for several months, when they feel the time is right they will put your child in what is called a broomstick plaster. This entails positioning the legs in such a position as to force the ball at the head of the femur deep into the hip joint socket.

They keep the legs in this position until the new bone on the head of the femur has grown. Both legs are put in plaster-cast with a bar running between the two to keep the femur head in position.

I see from several websites that in some children they only partially cover the 'good' leg with plaster, and run the separating bar at an angle. My child had both legs covered to the ankles.

Some children are put into a brace to restrict their leg movements.

Plaster or brace, once treatment is started, expect it to be in place for anything from 9 months to 2 years.

It will not be removed until the consultant sees from X-rays that the bone has regrown in the correct position.

So many children do end up disabled for life, as my consultant explained, because the ball of the femur, after breaking down, regrows.

If the femur is not fully repositioned 'home' in the ball joint when the regrowth occurs, it will regrow outside the ball joint and then it can't be put back where it should be.

When Perthes' goes undiagnosed, your limping child could stay a limping child forever. The bone breaks down, then it regrows, all with a 3 year period.

There are no other symptoms. Just a limp and a pain the child gets, in the affected leg. This pain can be severe, but goes away on resting the affected leg.

Four times as many boys gets Perthes' than girls. It's only symptom is pain in the affected leg, on the thigh or occasionally lower down in the leg. The pain moves around so it is difficult for the child to pinpoint where the pain is.

It happens to children around 6 - 10 years old, but happens occasionally to younger or older children.

The younger the child is, the better the chance of recovery.

After puberty starts, the bone does not regrow.

The most important thing to help your child to recovery is early diagnosis.

If your child is limping without any obvious cause, ask your doctor for an X-ray to rule Perthes' out.

If your child is diagnosed as having Perthes' Disease, you may be entitled to extra health care benefits. Check with your local Health Care Department to find out.

Boy or girl, all their lower clothing is going to have to be altered. With their legs in this fixed wide apart position, they are not going to be able to put underwear on normally.

You can cut their underpants and rejoin them with velcro for easy fastening.

Girls can wear loose skirts,but boys will need their trousers altered in order for them to wear them. Again it is a case of taking scissors to them, opening then up and applying velcro or similar fastenings.

I'm not talking about round the world trips, but even trips to the shops can be troublesome with your newly handicapped child, who needs to be in a wheelchair. Your car has to be big enough to accommodate one, though to be honest most children with Perthes' very soon adapt to their condition and can leap onto the back seat from their wheelchair, leaving you plenty of space to fold it up and put it in the boot.

You will be amazed at the agility your child shows despite the 'stookies' the hospital will put them in. They will be able to climb stairs, dance, hop in and out of cars and even walk a few steps in their own peculiar way while their legs are bound in an unnatural position.

While Perthes' is rare, if your child is diagnosed with it, there is normally a support group available in your area.

Only 5.5 children per 100,000 develop this disease which is sometimes also known as Legg-Calve Perthes Disease, or sometimes just Calve Perthes Disease (avascular necrosis).

Some children recover from Perthes Disease only to get it again a short time later in the other leg.

This is rare but it does happen.

If your child is diagnosed with Perthes Disease, seek out an online support group.One such group in the UK is simply called the Perthes' Association and you can contact them by clicking on the hyperlink provided here.